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Widespread service fragmentation for patients and families with tuberous sclerosis complex (TSC) in the Republic of Ireland

Abstract Background Tuberous sclerosis complex (TSC) is a rare approximate 1:6000 birth incidence, a genetic disease with a wide variability of physical and neuropsychiatric symptoms. Patients require lifelong care from multiple healthcare specialities, for which International and United Kingdom (UK...

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Principais autores: M. Vasseghi, C. Behan, A. Connolly, D. Cunningham, E. Dempsey, C. Flynn, M. Galvin, G. Griffin, P. Moloney, M. Murphy, Y. Owen, S. O’Malley, G. O’Rourke, O. O’Sullivan, C. P. Doherty
Formato: Artigo
Idioma:Inglês
Publicado em: Springer 2024-08-01
coleção:Journal of Rare Diseases
Assuntos:
Tuberous sclerosis complex (TSC)
Audit
Care
Recommendations
Coordination
Acesso em linha:https://doi.org/10.1007/s44162-024-00049-8
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